Woman says mother's end-of-life choices ignored

Sometimes, the orders -- resuscitate, or don't -- aren't clear or aren't in place. Other times, they are simply ignored.

By BARBARA PETERS SMITH

Long before dementia robbed Marjorie Mangiaruca of the ability to hold a conversation with her daughter, they had come to a solid and comfortable understanding in the 30 years they shared a home.

“She said she never wanted to suffer, that when the time came, don't do any heroics to keep her going,” says Sharon Hallada of Lakeland. “When I would put her to bed at night, she would look at me and say, 'I don't want to live like this anymore.' ”

So Hallada, an insurance underwriter, did everything by the book. When her mother began showing signs of dementia eight years ago, her advance directives for end-of-life medical care were in order, including a living will and a document naming Hallada as her health care surrogate. Hallada's sister and brother knew of their mother's wishes, she says, and accepted her desire for a peaceful death. When Mangiaruca had to be hospitalized, her doctor completed a DNR form, short for “do not resuscitate,” the clearest way legally available to refuse extraordinary life-saving efforts.

Instead, according to a lawsuit Hallada has filed against a Lakeland hospital and nursing home, her 91-year-old mother received a series of strenuous and intrusive measures — including cardio-pulmonary resuscitation, cutting a hole in her neck to insert an airway, and injecting her with drugs to restart her heart and paralyze her muscles.

Then, the complaint says, she endured a protracted hospital death after Hallada was forced into the one decision she had never counted on facing — to disconnect her mother from a feeding tube and ventilator.

“At that time I did not know she'd had a heart attack,” Hallada recalls. “All I knew was that she was on a ventilator, and that's not what she wanted. I sat there for five days, day and night, holding her hand, not really knowing what happened to her. I was saying to myself, 'Am I doing the right thing, withholding treatment?' ”

Elder law attorneys and aging specialists urge all adults to plan for the unexpected, executing end-of-life directives to make their passing as easy as possible for them and their loved ones.

But as Mangiaruca's case and others suggest, even the best planning can be thwarted by the facilities entrusted with caring for many older Floridians.

The two defendants, a Lakeland hospital and nursing home, declined to comment on the litigation.

An analysis of state records shows that the experience of this Lakeland family is not isolated. In the last three years, the Agency for Health Care Administration cited 15 Florida nursing homes — two in Southwest Florida — for failure to honor advance directives in the case of a death, which is a violation of state law.

All 15 state inspections were in response to specific complaints, according to agency documents, and there is no way to track how many more times a facility's disregard for end-of-life wishes may have gone unreported. The incident involving Hallada's mother was revealed to the state when her lawsuit was filed, for example, and there is no record of any agency followup in that case.

But the variety of reasons why things went wrong in these 15 instances suggests that it can happen wherever there is a lack of focused attention on making residents' wishes a priority. Carelessness and confusion that result in a failure to follow established protocols are a recurring theme in these agency reports. And the medical culture appears slow to respond to the relatively new use of advance directives: Checking the file to determine a person's wishes is usually an afterthought in these cases, instead of the first step.

The longevity boom has given rise to greater focus on every individual's right to choose a dignified and pain-free death, or opt for all possible life-saving measures. The vast majority of nursing home residents — or family members, speaking for them — choose to preserve life at any cost, giving them a status known as “full code.”

But chronic illnesses that require skilled nursing care can place families in the role of making these decisions without fully understanding the consequences, aging specialists say. For instance, few people know how painful CPR can be for a frail elder, and how rarely it leads to a good recovery.

Failing to honor advance directives can multiply the pain, expense and grief surrounding the end of a life. Some long-term care specialists say better staffing and training are needed to make this a priority in nursing homes, while others say communication within families needs to improve — along with a culture change to address society's approach to death.

Hallada hopes her lawsuit will help bring about this change, and lead to clearer conversations. Her attorney is joined in the complaint by Compassion & Choices, a national organization that supports the right to make end-of-life decisions.

“Just because you might have your papers signed and you think everything's in order, you still have to have an advocate, especially if you don't have the papers on you,” Hallada says. “That's what this whole thing is about.”

The yellow dot

The last three years' 15 incidents of disregard for advance directives in Florida nursing homes account for one third of all immediate-jeopardy findings — citations for abuse or neglect so widespread that it poses a danger to other residents — says Brian Lee, executive director of the nonprofit Families for Better Care in Tallahassee and a former state ombudsman for long-term-care. Lee found those cases by checking the Medicare nursing home database for immediate jeopardy reports, and isolating the ones mentioning CPR or DNR.

Two of the 15 cases resembled Hallada's situation, in which a DNR had been completed but CPR was administered anyway. In one case in January 2013, at Golden Glades Nursing and Rehabilitation in Miami, the state reported that a resident of the home for more than six years — with pancreatic cancer, diabetes and a host of other ailments — received chest compressions for 14 minutes before death was pronounced.

The other documented attempt at revival against a resident's wishes happened in May 2012, at Consulate Health Care Center of Winter Haven, state records show.

A 102-year-old whose doctor had signed a DNR a day earlier was found “not breathing, no heart rate or pulse, skin color ashen, and cool to touch.” A Code Blue was called, according to the record, and CPR was administered for about 40 minutes until paramedics arrived, at 1:05 a.m. The resident's doctor answered a page at 1:10 a.m., the nurse's notes say, and said his patient had a DNR. Paramedics demanded that the proper form be presented before they suspended the attempt to revive him at about 1:15, a full 50 minutes after he was found.

Consulate was cited multiple times for haphazard procedures when it came to advance directives. In the case of the 102-year-old, a nurse had checked his chart and found no yellow DNR form. The state inspector asked the facility's nurses how they knew when a resident did not want resuscitation. One of the nurses, the report says, explained that “there should be a yellow dot on bulletin board in room and on the outside of the resident's chart too. She tried to show us a yellow dot in a resident's room, but it was not there. She stated sometimes it gets knocked off by the curtain.”

Most of the complaints investigated by the state were at the other end of the spectrum, arising from a failure to administer CPR. In these 13 cases, residents had either not completed paperwork or had asked for all available life-saving measures, and did not receive them when they were found unresponsive. But that is not necessarily because those are the most prevalent cases.

Rather, Lee says that in such instances, grieving families are more likely to take the time and trouble to make a report to the state.

“They're trying to abide by the wishes of their parent or parents or loved one,” he says. “They're so fraught with guilt and sadness, and then that anger comes along, and these folks have reached out to the agency to file these complaints.”

Lee expressed surprise at the disparity of penalties among the 15 cases. Combined state and federal fines against a facility range from just over $124,000 to a low of $2,275.

“We know from these reports that AHCA is acting on these problems,” he says, “but I don't think they're penalizing the facilities like they should, to incentivize a meaningful improvement.”

This is the intention of Hallada's lawsuit, says her attorney, Jeffrey Badgley of Orlando. A malpractice specialist who usually defends health care providers, Badgley says hospitals and other care facilities are slow to change without a strong financial incentive — and that usually happens only after litigation.

“What families are up against in these situations is that there is a great deal of momentum in health care situations to do things in a certain way, and pay attention to some things and not others,” he says. “What we're after is a shift in focus, to get them to pay more attention.”

'Put on the paddles'

Lee believes that the pattern of confusion and disorder revealed in the 15 reports could be addressed by an investment in better training and more adequate staffing levels.

“It goes right back to labor costs,” he says. “Are they going to pay the shareholders or put the money back in the nursing home?”

But Kathryn Hyer, director of the Florida Policy Exchange Center on Aging and a University of South Florida professor, believes the miscommunication surrounding end-of-life wishes reflects society as a whole.

“I actually think that it is much more profound,” she says. “I think in many fundamental ways, we are a culture that has a difficult time reconciling itself to the fact that individuals die. There's so much that we can do to prolong life, and really wonderful interventions that make the quality of life much better. It's hard — even for health care professionals — to understand at what point the care would be futile.”

CPR is successful in restoring life about 5 to 20 percent of the time, according to the most-cited estimates, with considerably poorer results for older adults. But the law is that everyone who wants full resuscitation should have it, and most patients and families ask for it. Many do not realize, aging specialists say, that chest compressions break ribs, and intubation can be painful and terrifying, especially for people with dementia.

“On TV it always succeeds: Put on the paddles and they're good as new,” says Kenneth Goodman, director of the University of Miami's bioethics program. “When people have unrealistic thoughts, they ask for unrealistic things, and nobody tells them it's going to hurt a lot. Or that people who survive CPR can have hypoxic brain damage because they couldn't get to them quickly enough.”

In some instances in which a long-term care resident did not receive full resuscitation efforts, Hyer says, the nurses or aides who have given that person “intimate care” may have a knowledge of his or her preferences that is not reflected in the paperwork. A failure to have frank conversations with families and file documents properly often leads to conflicting orders — where a DNR is in the chart but has not been properly signed, for example.

“Sometimes people just outright don't want to talk about it, and they have a right not to talk about it,” Hyer says. “Families have all kinds of dynamics, and sometimes individuals are not ready for the death and have unresolved issues.”

Hyer is working on a program to reduce repeated trips to the hospital from nursing homes, when acute care is not necessary or useful. She has found, she says, that patients or families with unrealistic expectations “want to buy time and have more things done.”

Hyer says while some facilities struggle with the challenge of getting advance directives filled out and honored, others have well-designed programs to make the end of life as dignified as possible.

“They can do an exquisite job,” she says. “Nursing homes can be a place where death is good.”

The missing DNR form

The Lakeland case of Marjorie Mangiaruca involved what was supposed to be a short stay at a nursing home.

Sharon Hallada says her mother, having never lived on her own, moved in with her daughter and son-in-law, Brian Hallada, when she became a widow. The three came to Florida from Syracuse, N.Y., about 10 years ago. Even after Mangiaruca developed dementia, she was able to walk without a cane, but needed help eating and dressing. Hallada worked from home, and cared for her mother full-time.

“Every day I would take my break, and we would go get ice cream,” Hallada remembers. “It was hard for me, because I never had children. To be put in that position was like having a 100-pound baby.”

When her mother became confused and weak on Sept. 29, 2011, Hallada took her to the emergency room at Lakeland Regional Medical Center, according to the legal complaint. She was diagnosed with a urinary tract infection, a common cause of disorientation for elders. On Sept. 30, her attending physician signed a DNR after a conversation with Hallada.

On Oct. 6, still too weak to return home, Mangiaruca was sent to Oakbridge Healthcare Center. According to the complaint, the hospital “failed to transfer with the patient a copy of the DNR order.” The nursing home's record shows, the complaint adds, that “no effort whatsoever was made to determine the end-of-life wishes for this seriously ill, extremely elderly patient.”

At the time, Oakbridge was one of the 15 facilities cited by the state for failure to honor advance directives. The state fined the facility $13,500 for a death in June 2010 in which the resident's DNR form was incomplete and no CPR was administered.

It was just over a year later, on Oct. 10, that an Oakbridge employee found Marjorie Mangiaruca gasping for air, according to Hallada's lawsuit. “One of the nurses at the facility stuck her fingers down the patient's mouth to try to get her to breathe,” the complaint says.

Emergency responders took Mangiaruca back to Lakeland Regional, according to the suit. They tried to establish an airway, but she was fighting them. When her heart stopped, they pulled over and started CPR. Next came a tracheostomy and airway tube, followed by drugs to restart her heart and paralyze her muscles so she could not resist their life-saving efforts.

At Hallada's request, her mother was taken from the hospital's intensive care unit two days later, and given palliative care for comfort. It took five days after she was disconnected from a ventilator for her to pass away, on Oct. 17.

“The day that she died it was just me and her,” Hallada says. “She took a breath and held it, and another one like that. I was able to crawl up in bed with her, and hold her in my arms, and she passed away. But those five days before that were pure hell.”

When Hallada discovered that her mother's heart had stopped and been restarted, she says, “I was furious. Why sign all this paperwork if they're not going to be honored? The decision is hard enough to make, without having to make it over and over again.”

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